It has officially been over 72 hours and Annabelle is still breathing-tubeless!
And we had a really good day today, so Mommy is SO very thankful! She had a good day yesterday too, with some desat issues in the evening though. So today is her first really really good day with all GOOD blood gasses. Oh, and we moved rooms again, which is always a joy since we’ve been here so long and have probably way too much stuff here! In my defense… I basically live here right now:-)
Tomorrow, as long as she does well overnight, she will “graduate” to the vapo-therm machine. This is like a regular nasal cannula except instead of hooked up to 100% oxygen (which isn’t be good for her given her special heart) it has a blended oxygen level and gives a little more pressure support for her.
Part of me is afraid of letting my guard down. Her blood gasses have been really good the last day and a half. She’s holding her own as far as O2 sats. But in the past every time I started to get comfortable and hopeful, something bad happened. Now, I’m not a pessimist. I really am not. But I’m still holding my breath and scared to stop worrying (er, sorry… stop concerning… *grin*)
Regardless, I’m so very thankful to Jesus for bringing us this far. Not as quickly as *I* would have liked it, but God’s plans are so much better than mine, and His timing is so much more precise.
As far as next steps after Vapotherm, I have no time frame or order. It is one of my questions to ask. Up until this point, the answer was always, “we need to get her off the ventilator first.” No other steps could be made until then.
I do know, however, that we have the following outstanding issues:
- Milrinone – This is the medicine that kept her in the hospital in the first place. She cannot go home on it, but without it, her leaky valve got even more leaky, and she didn’t tolerate the by-the-mouth alternative. This is probably the next step… seeing if she will tolerate being weaned.
- Frequent UTI’s – there is a study they have to do of her bladder to see if she needs surgery to help this.
- Reflux – Back a lllloonnnnnggg time ago, they did an upper GI study and found that she had severe reflux. Plan had been to do a Nissen (a stomach surgery that would help her not reflux) and a G-tube (feeding tube directly into her stomach). It’s been so long though, she’ll need a repeat study. WE are praying that she does better and maybe wouldn’t need it any longer!!
- Glenn – Still need to have her *2nd* now 3rd heart surgery. It remains to be seen if we will go home before this, and timing of this is still very much up in the air.
But for today, even though these are all big prayer requests, I’m resting in the fact that my baby has taken the big first step toward recovery again. Before, these issues were in the back of our mind. Now, we can start working on them!
A few pics of Annabelle having fun looking at her toys! She stared at them for almost an hour before she fell asleep!!
What great news about the vent and the blood gasses. You really are such a trooper.
I am praying for Annabelle every day. I will be praying specifically for the other issues. I hope that her being bigger and stronger will mean she does better with the GI study. C had pretty bad reflux, but thankfully the docs were able to work out a med combo (reglan & prilosec) so that she just had the NG tube.
I am hoping to see the vapo-therm machine tomorrow! And I'm sorry you had to move. It is a pain to get resettled.
What a wonderful praise! It is so difficult to not be on the edge of your seat when you've felt disappointment before. You are such a strong, amazing woman! Maybe one day we will meet in the "real" world! Ha! 🙂
Woohoo!! That is amazing, Krista! I am thrilled that she is doing so well.
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